Meet Courtney Hays of Benton.
Courtney, 9, suffers from Juvenile Dermatomyositis (JDM), is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues. Due to JDM, Courtney is not able to be in direct sunlight.
Courtney was diagnosed in August 2014 after her parents noticed a rash on her skin. Their initial thought was poison ivy, but decided to get it looked at. Courtney’s pediatrician wanted to wait a couple weeks for treatment, but Amanda urged something be done immediately. A dermatologist confirmed it was JDM and Courtney began treatment immediately.
Her family works daily to make sure she still enjoys her favorite childhood activities, such as riding horses and fishing, while ensuring she isn’t overly exposed to the sun.
“She wears sunscreen inside and outside and has lots of hats,” Courtney’s mom, Amanda Hays, said. “We wait to go outside until later in the day, especially in the summer. She doesn’t get to go outside for recess at school. It’s been hard for sure.”
Courtney was recently selected as a wish recipient for Pay It Forward Networking (PIFN), a local non-profit group committed to granting wishes for children with special needs, disabilities and/or life-threatening illnesses.
When asked what her wishes would be, Courtney’s giving heart proved strong. Her number one wish was to raise awareness for (JDM), which affects about three in one million children each year. Next, she asked the PIFN community for donations that would go toward finding a cure for JDM. Lastly, she asked for a trip to Great Wolf Lodge so she could enjoy the water without being exposed to the sun.
Through the power of social media, her wishes came true. PIFN founder Kassi Robinson said she not only wanted to help Courtney raise awareness, but wanted these wishes to be a bright spot in her life.
Members of the PIFN community went above and beyond to make her wishes come true — Vicki’s School of Dance – makeup and a private dance lesson; Che Bella Day Spa & Salon – hair and nails; Dream Hunt – day of fishing in the shade; Benton Elementary – awareness and wear blue for Courtney fundraiser for a cure; KSLA – JDM Awareness story; Bossier Press-Tribune – JDM awareness story; 7th Heaven Ranch – night time horseback riding lessons; Get Fresh Deli in Benton – fundraiser for Cure JM Foundation; Great Wolf Lodge – two night stay.
Amanda was moved to tears by the generous donations from the PIFN community. “Her biggest thing is she wants to be normal again. I have not seen her this happy since she was diagnosed,” she said. “It’s beyond amazing. We are so blessed. God is amazing for sure. He has blessed our family daily.”
Courtney is the daughter of Bill and Amanda Hays.
To become part of PIFN or to nominate a child for wishes, simply go to www.payitforwardnetworking.com or Facebook.com/payitforwardnetworking.
